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Show NotesWelcome to this week's chronic illness podcast episode of Invisible Not Broken. This week I am talking with Elana who has the chronic illness condition neurofibromatosis, bipolar and partial blindness.
Along with her chronic illness, she is a caregiver to her young children who have their own disabilities. Elana is not only taking care of her own physical limitations she is also parenting children who have their own mental and physical challenges. She spends close to 40 hours a week coordinating care for her family.
Her daughter is on the autism spectrum, ADHD, and childhood Clinical Depression. We talk about school's fiscal responsibility to children with special needs. Some of the struggles of parenting and disciplining a child with Aspergers and how to handle a first grader who has clinical depression.
Her son has NF needing constant wheelchair and g tube. We talk about some of the VERY difficult decisions parents with a genetic disorder have to make. Come to this discussion with kindness and gentleness. Each choice is DEEPLY personal. The definitions of a medical miracle and one of the most lovely stories I have ever heard.
How surgeons handle a fourteen-hour brain surgery and why Elana has twitches when she hears the theme to Orange is The New Black .
We talk about self-care and the frustration of hearing DECREASE your stress. Drs. beware. The multidimensional theory of chronic illness and caretaking. Grab your bowtie and fez, ok I went Dr. Who and Neil Gaiman's Neverwhere but Elana is using Stranger Things. We are geeks We are fine with it.
NestingDivorce Style
Spousal Support
Michelle Obama Go High
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Thank you! Questions & Answers
What is your disorder? *
NF1, Mood Disorder, Essential Tremor (Me). ASD, Mood Disorder (DD), Epilepsy, Epilepsy, CP, CVI, CAPD, Medically Fragile, G Tube (DS)
At what age did your disorder become a daily issue? *
2
Who were you before your illness became debilitating? *
A regular mom before they were sick/special needs
What would you do if you were not dealing with your invisible illness? *
I have absolutely no idea. Unfathomable.
What would you like people to know about your daily life? *
That I am tired ALL the time. That it feels like too much, ALL the time. That you have to continue, even if there is no "light"...
What would make living and moving in the world easier for you? *
If society actually supported families like mine rather than empty promises. If people were not afraid of my kids (or wracked with "survivor guilt")
Do you have any life hacks? *
Not to be glib, but its all a life hack. Everything from parking when there is no wheelchair lift, to managing hospital discharge to getting kids with eating disorders fed. This is not what it was supposed to be.
What kind of support do you get from family or friends? *
This is really hard to answer. Sometimes I'm overwhelmed by the large and small outpourings of love. Sometimes I'm alone on an island and its like no one can see me.
Have you ever had someone not believe you have an invisible illness because of your appearance? *
Me less so because I'm very proud so I don't share much. My daughter, all the time.
Has this been a positive or negative experience? *
It's been a learning experience. As people get to know her better it's interesting to see how their perceptions change. It's also helpful that even in the last 5 years, they way people think about autism has changed.
Would you care to relate the details of what happened when someone didn't believe you were disabled?
It was very hard and remains hard to get my daughter the services she needs. There have been times when people come around and I want to scream I TOLD YOU So but that does me no good. I'm learning a lot about humility and patience.
How has your invisible illness affected your relationships? *
Most of the people I used to know are not in my life in a meaningful way. The ones that still are I appreciate even more. Being a caretaker gave me the strength to release my ex and I from a relationship that had died long ago. We work very hard on keeping things amicable.
Is there anything you are afraid to tell even the people closest to you? *
Not really. Almost nothing frightens me. If people cant take me for 100% who I am, they can go away. Life is too short for any of that.
Does the fact that your disease is invisible change how healthcare professionals treat you? *
I'm not sure because we see mostly specialists who specialize in our particular diagnoses. I am glad that none of us of chronic pain. I've heard that's the worst.
What is your best coping mechanism? *
My stubborn personality. My work hard/play hard approach to life. Having few fucks to give about anything that is not important.
What are you the most fearful of and hopeful for in the future? *
I'm fearful that it's too late for the world in general. Well less fearful and more that is my conclusion. I think the human race is totally doomed. The US is crumbling and I have no hope really for the long term. Who are we to think that we are better than any other country and/or that our species is above extinction. We don't use our higher brain power for much good. For hopeful, it's the little things. I'm hopeful no one is hospitalized in the next 6 months. That would be awesome!
What is your favorite swear word?
Fuck or Douchebag
Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.
So many. Id love to do an entire recording on the small non-profits that truly save lives. One goal I have is to help people target their philanthropy to more efficient, higher impact organizations.
What is the best purchase under $100 that helped your life
Netflix
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